Tales from my eventful and ongoing journey as a Generation X caregiver for my father and as an advocate for Lewy Body Dementia caregivers.

Thursday, January 9, 2014

Tips on Parenting.

My friend and I went out to dinner the other night to catch
up on each other’s lives.She has
recently joined me in the ranks of caregiver-dom and has had to endure a very steep
learning curve.She moved her mother,
who was still independent and in reasonable health, in with her a few months
ago.A month after that, everything hit
the fan and she began a journey down the road of hospitals, doctors, and
difficult decisions.Her mother is now
home with her but has not fully recovered yet, and they have entered a place I
know all too well – the place where you are now your parent’s parent, and
neither of you are very happy about it.

Interestingly, I am also in the middle of writing a chapter
about it for my new book, so it is very much in my mind.Here is what I had written just before we
spoke:

“One of the hardest things I
faced as a young(ish) caregiver was the question of how to parent my
parent.There wasn’t really much
information provided at the time about how to do any of this; no effective strategies,
no suggested phrasing, no plans of action.I had to learn as I went and deal with the questions as they came
up.How do I trump my own father, who,
let’s face it, was clinging to his authority and superiority with every last
fingernail?How do you flip the energy
of a relationship so that power that flowed in one direction now flows in
another?Because I can assure you – the
flow-er does not want to become the flow-ee, if that makes any sense.How do either of you swap such ingrained
roles; parent becoming dependent child, child becoming authoritative
adult?How do you avoid stomping all
over each other’s boundaries and hurting each other’s feelings?How do you avoid getting triggered by your
parent’s refusal to cooperate or their interesting new personal and behavioral
habits?And – possibly the most
difficult – how do you help your parent navigate through their grief and rage
at this process; and should you even try?”

My father, an independent, proud and
autonomous man was not anxious to give any of that up and we struggled for
months about our new roles.One of the
things I found the most difficult was slipping out of my automatic deferral to
his age and authority – something that was ingrained in me from childhood.It took me a very long time before I could
make decisions without second-guessing myself or asking myself whether it was
something he would have done.Listening to my friend, however, brought it
all back: the struggles, the compromises, the threats, and the bargaining.What I realized as she was talking, however,
was how easy it has become.

I would never have guessed that
being my parent’s parent was a role that would become second-nature.I no longer agonize about decisions, I just
make them.I still act in his best interests,
of course, but I no longer have to think about his input, as my friend does,
nor do I think about how he would have acted.It has, of course, taken ten years and a lot of work to get to this
place, but I’m grateful to be in it, and it’s good to look back and see how far
we’ve come.I feel for her that she is
right in the middle of it, but I do have this to say: Just wait, in ten years,
it will be totally second-nature!

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LBD Caregiver Link

LBD Caregiver Link

Toll-free LBD Caregiver Link – 800.539.9767

LBD families and caregivers can connect directly on a regional basis, through the LBD Caregiver Link, featuring “Lewy Buddies.” “Lewy Buddies" are experienced LBD caregivers who share their time and experience with LBD families by:

vListening compassionately and confidentially to the challenges of LBD families and sharing their own personal experience with LBD

vOffering emotional support

vReferring families to additional LBDA programs and services as appropriate for their needs.

While Lewy Buddies are not able to provide medical advice and are not medical professionals, they are typically well informed about LBD through their personal experiences and volunteer training with LBDA. They may also be able to help identify information and community resources concerning the diagnosis and care of a person with Lewy body Dementia.

When calling or emailing the LBD Caregiver Link, you will speak with an experienced caregiver who can provide information on LBD and who can also share their personal experience and compassion.Please leave a message and an LBDA volunteer will return your call within 24-48 hours.

"Our deepest calling is to grow into our own authentic self-hood, whether or not it conforms to some image of who we ought to be. As we do so, we will not only find the joy that every human being seeks -- we will also find our path of authentic service in the world." Parker J. Palmer

FEATURING:

Toll-Free Hot Line at the AFA (Alzheimer's Foundation of America)

1-866-232-8484

Compassion. Knowledge. Care. That's what AFA's toll-free hot line delivers. When you reach out to us, licensed social workers and other professionals knowledgeable about Alzheimer's disease and related illnesses will answer your call. They will respond to your questions and direct you to appropriate local resources to meet your needs. No question is too small; no concern is too insignificant.

AFA's toll-free hot line provides information, counseling by licensed social workers and referrals to community resources across the nation.

The hot line operates during regular business hours—Monday through Friday, 9 am to 5 pm (ET). During these hours, social workers are available by phone, as well as via Skype and live chat; to connect via Skype and live chat, click here. At all other times, please leave a message and we will return your call. To ask a question via e-mail, click here. If your situation is an emergency, please dial 911 when appropriate.

***************************Care Connection Teleconferences with the Alzheimer's Foundation of America.

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http://www.fulllifecare.org/

Welcome to Full Life Care – formerly ElderHealth Northwest. Full Life helps adults of all ages with chronic illnesses, physical or developmental disabilities. We are a not-for-profit organization dedicated to improving people’s lives and supporting caregivers. Since the 1970s, we have helped thousands of individuals preserve their dignity and avoid living in a nursing home or in isolation.

This is a great organization. My Dad visited them for years and got a lot of support through their Men's Support Group. I highly recommend them for help and support of your loved one.

*******************************Check out Seattle's Grief center if you or someone you know needs a little extra support during a tough time. http://www.healingcenterseattle.com/ *******************************What is the Helpline?

The Alzheimer's Association's Helpline is a toll-free number that you can call 24-hours a day, 7 days a week to get information about Alzheimer's disease. Through our National office, we have the ability to serve individuals in 140 different languages by accessing translation services.

Call 800.272.3900 to speak with a trained Helpline specialist who will provide emotional support and appropriate referrals to local resources in the 23 counties served by the Association. All calls are confidential.

About Me

I'm a writer, caregiver advocate, hospice/bereavement counselor and care manager for my father, who suffers from Lewy Body Dementia. I think it's important to talk about caregiving from my point of view as a member of Generation X. I also think it's important to spread the word on what Lewy Body dementia is, and how to deal with it effectively.
Some names, dates, details have been altered due to memory discrepancies, to maintain privacy, and to ensure narrative flow.